Try walking a mile in Baby Lukas’ shoes
Lukas was born a normal baby on 20 January 2015, but ever since, his life has been nothing short of a challenge for him and his loved ones.
Lukas Etsebeth has struggled to remain healthy throughout his entire life with a host of unidentified disorders that often make life difficult for him and his family.
Lukas’ father, Koos, told the Northsider, “Lukas’ condition is, according to some of the best paediatricians, neurologists and specialists, an interesting case and a challenge to identify exactly what has been causing the problems.”
It all started shortly after he was born, when, during his routine six-week check-up, the doctor detected some bleeding on his brain when he did a sonar scan.
A follow-up visit was then scheduled for when he was 12 weeks old, and the initial bleeding was not detected again. However, there was an increased amount of fluid on the brain which the doctors attributed to the fact that his posterior fontanelle had not closed.
Lukas was scheduled to undergo an MRI on 20 April 2015, but this could not be done as he was ill with pneumonia. He then began to struggle to breathe and it was discovered that he had an under-developed airway. Shortly thereafter, he was diagnosed with laryngomalacia, which is a congenital softening of the tissues of the voice box, just above the vocal cords, that most children outgrow.
Lukas eventually went for an MRI on 22 May 2015. This indicated that he had excessive fluid on his brain, so a shunt was inserted in June of the same year.
Over the next year or so, Lukas was in and out of hospital for various reasons, ranging from a simple fever to being diagnosed with the Coxsackie virus, a ribonucleic acid (RNA) virus that can lead to hand, foot, and mouth disease (HFMD).
At the time, Lukas had been taking Epilim, an anti-convulsant medicine, for several months. His mother, Janine, believes the continued dosage of Epilim has affected his development.
“He was doing okay, he had been talking and had also started showing signs of being able to stand with a walker,” she said. “But then, after starting the Epilim, things stopped developing as they should.”
By June 2016, Lukas was 17 months old and had already begun speaking to a certain extent as well as leaning against a standing frame for 52 seconds, and leopard crawling as well.
However, about a month later, Lukas stopped talking, and hasn’t been able to speak since. “All he can do now is make noises, he can’t speak at all,” said Koos.
Lukas began physiotherapy sessions in January 2017, when he was diagnosed with cerebral palsy and his parents believe the physiotherapy has definitely helped. His parents are now awaiting further test results in the hope that Lukas does not have cerebral palsy. He recently underwent surgery on his lower legs and feet in the hope that this would improve his chances of walking.
A sample of Lukas’ blood is currently overseas undergoing tests, in the hope of identifying the condition that has been causing the Etsebeths such grief.
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